Written by Beth Johnston, Development Officer at the FSH Society When my husband, Jeff, was diagnosed with FSHD in 2001 (after years of wondering what was going on with his… Read More »
Upcoming Denver FSHers Meeting: March 25th, 2017
Get our new Bach 2 Bowie T-shirt!
Our eye-catching T-Shirts, totes and mugs feature the Bach 2 Bowie logo from the Ghostly Gala, our annual Los Angeles-based event to raise awareness and funds to fight FSH muscular… Read More »
Search for Chief Executive Officer
The FSH Society is seeking a committed, experienced leader to serve as Chief Executive Officer (CEO). The CEO will lead the Society in meeting its important mission: to serve as… Read More »
Johns Hopkins Studies
Johns Hopkins and the Kennedy Krieger Institute are currently recruiting for two studies! Volunteering for studies like this helps provide researchers with the information they need to provide better treatments,… Read More »
Rare Disease Day at NIH
Frank Kolakowski and Manuel Gomez, FSHD advocates extraordinaire, were on hand to represent FSH muscular dystrophy at this year’s National Institutes of Health Rare Disease Day event. Thank you!